This post will not be well received and may get me thrown off the list.

Since way before Lewy raised its ugly head, I determined that, if I can manage it, I'm not going to subject myself to any of this suffering dying crap. I intend to go out on my own terms.

Gail

Sun Jan 16, 2011 1:10 am

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: I'm outta here.

I have posted several times that, if I learn I have dementia, I plan to head north and jump onto an ice floe. And if I had a headstone [which I won't], it would read, "I'm outta here!".

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sun Jan 16, 2011 1:22 am

gailshef

Joined: Tue Feb 23, 2010 10:32 amPosts: 215Location: Kalispell, MT

Re: I'm outta here.

If I had a headstone, which I won't, it would read "Thin at last, thin at last, thank God Almighty, I'm thin at last!" Can't take credit for that one, saw it in a cartoon.

Sun Jan 16, 2011 1:54 am

nandel8

Joined: Sat Jul 31, 2010 5:28 pmPosts: 317

Re: I'm outta here.

I'll meet you at the ice floe. Nan

Sun Jan 16, 2011 2:03 am

Gerry

Joined: Sun Oct 21, 2007 4:18 pmPosts: 835Location: Acton, MA

Re: I'm outta here.

I do have a head stone, "KELLEY" heads it and then Frank's and my names and birthdates, only God knows what the deceased date will be. I told my kids I wanted our birth dates so in the futures they wouldn't be asking, "when was mom's birthday". I think we all want out of this, but I have to out live Frank or go together, we can't leave this for our girls. We've had 3 friends, all men, that shot themselves in the head because of health issues they couldn't deal with, they're out of their misery, but their families were devastated. So ladies, pray and hope God is listening, we're doing our penance now and have earned a peaceful passing.

For three days now, Dale has wanted to be 'free' after breakfast. He doesn't like the wheelchair and thinks of it as a sort of prison. He thinks his legs and feet are bound to it some way. Yesterday, he told me to move a bowl of fruit on the table because it was hurting his ankles.

Finally, today, I just said, "Go for it! Stand up and leave." I moved the foot rests away and got out of the way.

I knew that if he tried to stand, he would fall - but there are times when I wish he would just walk out.

He stood for a few shaky minutes and finally knew he couldn't leave... so he reluctantly sat back down.

If there is possibly a positive side to Lewy it is that it has taught us all to make a definite, written plan in case this happens to us, or, since we know what's coming to deal with it how we see fit. Big hugs to you, Gail, it sounds like you had a (particularly) frustrating day. I hope our being here helps. Sher

_________________Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.

If there is possibly a positive side to Lewy it is that it has taught us all to make a definite, written plan in case this happens to us, or, since we know what's coming to deal with it how we see fit.

Yes! Year before last I filled out a multi-page advanced directive including DNR, had it witnessed and sent copies to my daughters and told them where to find the original. I don't want them to have to make decisions in the middle of a crisis.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sun Jan 16, 2011 1:02 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: I'm outta here.

Gail - I'm with you on this too! I have a very detailed AD, have told my husband and kids ad nauseum that I will NOT "live" like my dad had to live the last 18 mo. And, I do have a couple of plans which I have asked several of my female friends who feel the same way I do, to tell me "when it's time". My husband says he'll send me out on a ice floe in Lake Champlain, but I don't like the cold THAT much! I also have talked with my GP and my cardiologist about my quality of life if I have a major life event. I would never want to put my kids or husband through this. Hang in there and do something nice for yourself today. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Sun Jan 16, 2011 1:55 pm

gailshef

Joined: Tue Feb 23, 2010 10:32 amPosts: 215Location: Kalispell, MT

Re: I'm outta here.

I'm not talking AD, I'm talking about taking myself out (NOT on an ice floe even though I love polar bears). Not just with dementia but for any dreadful, long-term disease or condition.

Naturally, I would have to outlive my husband, which seems to be the schedule anyway, nor do I have any family members to be offended.

I introduced this topic because it's so verboten, but some of us feel this way and this forum is ultimately about death and how LBD gets you there.

Sun Jan 16, 2011 3:02 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: I'm outta here.

Assisted suicide is legal in OR and now here in WA. That's what my mother wants if the situation warrants. Personally, I am against it for a variety of reasons, but respect and will honor her decision. It's a personal matter. The ice floe thing, for me, is not suicide but is similar to the tradition common to many cultures for old people who are dying to just walk out into the wilderness. If I'm not able to walk, I waited too long! Maybe a snowmobile.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sun Jan 16, 2011 4:11 pm

tiny

Joined: Mon Dec 27, 2010 11:34 amPosts: 67Location: North Carolina

Re: I'm outta here.

I too have decided to pack a backpack and head to Ireland. I'm not married and do not have any kids. Mom's in the early stages but before I'm too old or infirm, I'm going to listen to amazing live music, dance, drink my weight in Guiness, and die of laughter. I empathize with your perception of this forum but I disagree. For me, this forum is about LBD and life; living. Not what gets us to death but what helps all of us live.

_________________Katie (36) daughter of Marcia (70)

Sun Jan 16, 2011 4:17 pm

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Re: I'm outta here.

Gail, No one is going to remove you from the forum for voicing an opinion such as this, one thing that LBD and other long term diseases teach us, the caregivers is to really look at our own lives and wishes.

Just this past summer I had very risky sugery and I knew I would be on a ventilator and it was explained to us there might be a problem removing it and my daughter knew I would not want to live like that, totally dependent to others and thank goodness I was able to come off it and breath on my own !

_________________Irene Selak

Sun Jan 16, 2011 5:55 pm

gailshef

Joined: Tue Feb 23, 2010 10:32 amPosts: 215Location: Kalispell, MT

Re: I'm outta here.

Thanks, Irene.Assisted suicide is such a controversial subject and for many a religious no-no, so I thought it might not be considered appropriate. Not that anyone who is offended need read or reply.

It is legal in WA and OR, and in legislative battle in MT and VT.

Anyway, something I feel strongly about and wanted to provide "permission" for others to weigh in.

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